Yesterday we received yet another packet in the mail regarding J’s disability benefits. I picked up the phone and, as instructed by the letter attached, called the person who sent the packet to ask questions. He didn’t sound either thrilled or helpful. For some strange reason (and I think they get trained to achieve this purpose,) I felt like I had to apologize for calling and, egads!, wanting to know more about this paperwork. I don’t know you, but I can tell when someone is smiling condescendingly over the phone as I speak to them; I think it’s in the tone of voice, that slight derision that curls into the words and unravels into one’s ear.
My question was simple. How was I supposed to handle question number 10 (and all the others that were similar to it in nature.) Question number 10 is as follows: What were you able to do before your illnesses, injuries, or conditions that you can’t do now? See my point? It’s been sixteen plus years since J “changed” and, of course, he could -at the time- speak a few words, walk haltingly in the fashion of a not-yet two year-old, crawl quite quickly, and follow the general pattern of behavior of a not-yet two year-old. What was he able to do before that fateful morning when he stopped making eye contact and being in touch with the world as it is and WE know it??? How am I supposed to answer that?
“Well, don’t overcomplicate things.” That’s what I’m supposed to do…NOT OVERCOMPLICATE THINGS!!!! I don’t know you, but that doesn’t alleviate any of my concerns; it also doesn’t make me feel like these people who are in charge of determining whether J is disabled or not have any idea of what we’ve been going through while raising him.
As I told Dada this morning (over a much-needed cup of coffee and a slice of didn’t-need-it-at-all bread pudding,) I feel like we are suspected of concocting sixteen years of our lives and all that has gone into it. I admit I went into a bit of a rant. I couldn’t help myself. I have signed I don’t know how many forms to authorize the release of information from schools, doctors, hospitals, psychiatrists, therapists of every ilk, and I have to answer 22 questions, many of them with multiple subsections, detailing things like what J does for his pets, why he can’t go out unsupervised, what he likes to buy at the store. I also have to explain why he needs supervision when he bathes and that he needs to be reminded of when to take his med. In a nutshell, they are questioning everything we do for him, what he does for himself and why. It’s almost like they’re going to call back and say “what? He doesn’t really know how much toilet paper he needs to properly wipe after going Number 2???? You expect us to believe that????? WHO doesn’t know that????”
I’m sure they’ve heard all kinds of stories. I’m sure all the stories they hear fall under the category of “sob story.” I’m sure that every person who applies for disability benefits feels that their circumstances are special, clear to see, important. Maybe it is because our circumstances overwhelm us, take over our lives, but we all feel like we deserve a little less red tape and a little more kindness through this process. It sucks that the process doesn’t quite work that way.
The next time someone wags their finger on TV saying how we are a nation of takers, whiners, complainers, I might just wag a finger back. If there are people abusing the system, they have more wherewithal than I do; faced with all these intrusive and somewhat intimate questions, I balk at revealing details of J’s life for a benefit check. The letter attached to the questionnaire indicates that these people are trained to determine if J is disabled and therefore eligible for benefits, but how can you possibly determine that from questions I answer rather than from the many records I’ve provided access to?
I had to revisit J’s day from morning to night, and I had to remind myself of how many things he can and cannot do, and how different he would be if it hadn’t been for Autism. I cried. I didn’t do it loudly. I didn’t do it melodramatically, I just did it. There is something terribly painful about admitting that your 18 year-old needs supervision because he might not properly wipe after using the toilet, that he can’t be left to go alone to the bus stop because he doesn’t know how to do it yet.
There is something in this system that doesn’t work, isn’t there? You have hundreds of pages from other trained professionals and you’d rather know from me, from the person to whom these questions are a reminder of how screwed up our lives are. What insight can I give? Probably a lot, but it won’t help anyone understand J’s condition any better. If the psychiatrist, teachers, specialists, therapists, nurses, doctors can’t paint a clear enough picture, what’s a mom to say that will make J look as disabled as he truly is?
Oh, I don’t know…
This is one of these moments when I wish he had stayed “little.”